We are so honored that Crystal Lee Williams, a sweet, beautiful mama blogger in Katy, agreed to share her story and journey with us and all of you. If you’re not familiar with her blog, you absolutely need to run over and check her out and follow along on Instagram. She’s just a joy to watch, her content is so uplifting and relatable, and every time we see her smiling face, she makes our day better, brighter. She’s so positive and so strong in her faith and just omits such love into the universe.

The things we love about this mama are not only apparent on her platform, but we knew her heart the first time we met her at a Starbucks drive-thru window almost a year ago! She had this way of making you feel like you were a life long friend, drawing you in, and that forever stuck with us. People who can make you feel like that have a true gift. And so, of course we were thrilled when a few months after meeting she announced her pregnancy to the world! Everyone loves a pregnancy announcement, but Crystal shared that it wasn’t the easiest journey for her and her husband to conceive and she shared that story in the most beautiful post (you can see it here) and that vulnerability and truth she shared with her followers truly touched us and made watching her entire pregnancy that much more joyful!

Soon after her halfway mark in pregnancy, Crystal shared even more of her heart in a touching, honest, raw post about the news she wasn’t expecting from her 20-week anatomy scan. A scan moms are usually excited to find out the gender of their baby, Crystal and her husband were told just minutes after their ultrasound that the doctor suspected a cleft lip on the right side of their baby’s face.

This sweet, brave, faithful mama continued chronicling her journey into learning more about what life, treatment and surgeries would look like after her baby was born and you could see the beautiful comments from other women and mothers flood in to support and uplift this family during a time of uncertainty.

We all waited on pins and needles to see that perfect baby’s face as Crystal neared the end of her pregnancy and crept closer and closer to her due date. That baby was born on June 21st, weighing 7 pounds, 8 ounces and his name is Josiah. He is perfection and his mama’s story is shared with us below. We are honored to be able to share it with all of you, especially rounding out the month of July, which is National Cleft and Craniofacial Month.

Please join us in reading about this sweet family’s journey and supporting and uplifting them. We think they’re pretty wonderful people with a beautiful who have the perfect son, hand picked and chosen especially for them.

 

 


 

In Honor of National Cleft and Craniofacial Month – Our Story as a Cleft Family

Summers are busy, aren’t they? School is out, vacations are in full swing, and for me personally, there’s a lot to celebrate.

See, our family celebrates a lot of summer birthdays with mine being on August 19th. To add to that, my husband, Calvin, and I also had a summer wedding. This year we celebrate our 5 Year Anniversary on Saturday, August 3rd!!

Another thing that we have had the joy of celebrating this summer is the birth of our first child, our son, Josiah Lee Williams on June 21, 2019. That’s right, we have a newborn! I’m currently sleep deprived, reheating coffee constantly, and living off of dry shampoo and granola bars.

Josiah was long awaited. Calvin and I had tried to conceive for two years before we found out we were pregnant. Our journey to pregnancy wasn’t easy, but little did we know that we would be given news about our baby (during pregnancy we kept the gender a surprise and waited to find out until birth) that would impact our family forever.

Jordan Rivera Photography

 

At 19 weeks pregnant, Calvin and I headed to my doctor’s office for the anatomy scan that typically happens at around this stage of pregnancy. This is where we are able to see the baby through an ultrasound and where we’d normally find out the gender of our baby. Of course, as I mentioned in previously, Calvin and I decided not to find out the gender of the baby until the baby is born so we didn’t expect big news from our tech or doctor that day. We simply were excited to see our baby and hear the heartbeat. However, just minutes after our ultrasound, our doctor had other news for us… she told us the ultrasound tech suspected a cleft lip on the right side of baby’s face.

“A cleft lip?”, I thought.
“What is that exactly?”, I asked my doctor.
She proceeded to tell me that a cleft lip means the baby’s lip wasn’t formed correctly during early development. She assured us that if our baby indeed had a cleft lip, it could be repaired once the baby is born. Our doctor then ordered an in-depth ultrasound at Texas Children’s Maternal Fetal Medicine to confirm.

The Ultrasound

On April 15th we headed to Texas Children’s West Campus for the ultrasound and were also scheduled to meet with a Genetic Counselor following our ultrasound. At first, the customary grey and white ultrasound images made it difficult for us to see the cleft lip they saw. Until they turned the images to the 3D setting. Then Calvin and I were able to see baby’s little face. It was so sweet. When the baby turned and the right side of baby’s face became more visible, we instantly noticed the cleft lip.

Tears filled my eyes as I reached for Calvin’s hand. I saw it. An upper lip not fully formed. 

Due to the gap or cleft extending from the upper lip to the right nostril, the Maternal-Fetal Medicine OB, Dr. Mildred Ramirez, and her ultrasound tech concluded that baby Williams shows a unilateral isolated cleft lip and cleft palate. And that’s the diagnosis we walked out with.

Next we were to see a Genetic Counselor. She asked us various questions pertaining to medical history and how we were taking in all the information. She also made it a point to ask us if we had a strong support system, to which we both quickly said yes. She continued in saying that to families new to this, baby’s arrival can be shocking due to their face looking a bit different from the lip not being one continuous structure until repaired. She then gave us additional information on cleft lip and cleft palate and assured us that proper care and treatment is available to repair both a cleft lip and palate.What is Cleft Lip and Cleft Palate?

Cleft lip and palate is a congenital anomaly that occurs when a baby’s upper lip and/or palate do not fuse during pregnancy. A baby can have an isolated cleft lip, an isolated cleft palate, or a combination of the 2. The main issues developed by children with cleft lip and palate involve feeding difficulties, speech development, oral hygiene, dental problems and social interaction. [sited from Texas Children’s Hospital website]
A cleft lip and cleft palate can be repaired through a number of surgeries. Typically the first surgery happens at 3 months which is to repair the cleft lip. Anywhere from 12-18 months, the second surgery occurs to repair the cleft palate. Following that, most children with both a cleft lip and palate also need additional surgeries, such as a bone graft surgery, jaw surgery, and even nose surgery.

 

Jordan Rivera Photography

The Processing

Prior to baby Williams arrival, my husband and I had a few weeks left of the pregnancy to process and prepare. We knew life would look a bit differently for us and our baby. The many doctor visits, the surgeries, the social interactions, etc. We also took that time to intenitonally speak with our families, close friends, and church family about the baby’s diagnosis. Everyone has been incredibly supportive and encouraging, though it was something completely new to all of us. As we told the genetic counselor, we indeed are blessed to say we have a strong support system. We knew no matter how severe baby Williams cleft lip and palate would be, we’d have an incredible support system to lean on.

But as any mom that hears the unexpected about their baby to come, I had my share of restless nights accompanied by tears of sadness and endless questioning. I let shame and fear in, wondering if it was even okay to feel sad, to feel afraid, to cry.

And the answer was yes.

I wondered and questions what I had done wrong, why my baby, how would we afford all the medical care our baby needed, and the list goes on. But in the end I knew this child needed me to be strong for him or her from the start. So Calvin and I continued to prepare for baby’s arrival and held to faith and leaned on those around us. Because neither of us had a cleft diagnosis in our family’s medical history, Calvin and I also took the time to read up and research all we could on clefts by reading books, searching reliable websites, meeting with doctors, and talking to families who have journeyed through this before us.

Some of the sites that helped provide us with credible information on cleft lip and palate are:

https://cleftline.org
https://www.cleftproud.com

https://miamoo.org/pages/facts-about-cleft-lip-cleft-palate

Jordan Rivera Photography

Jordan Rivera Photography

The Birth

I wish I could tell you that Josiah’s arrival was an easy one. It wasn’t. I was induced at 39 weeks, labored for over 24 hours, had an epidural that wore off, and our baby was sunny side up and on my sciatic nerve with his chin up, so after over an hour of pushing, my doctor called for a c-section. At this point, our baby boy was still sunny side up, with his head hitting my pelvic bone with each push and my contractions getting stronger. Having a vaginal birth in mind, I was nervous about needing a c-section. But after being told I also had a 103 fever and the epidural had completely worn off and being completely exhausted, I knew a c-section was what was best for baby and I. They rushed me to the operating room and just minutes later, our son was born.

My husband was the first to see him. I asked him if it was a boy or girl, he announced it was a boy! I then asked him, “is it a cleft lip and palate”? He said yes. I then prepared myself to see my son for the first time. I knew that I would be seeing a face slightly different from that of other newborn faces. When they placed Josiah in my arms, I cried. Of course! My love for him overwhelmed me. He was finally here. And while yes, the sight of his wipe cleft lip on the right side of his face was more severe than I had imagined, but he was beautiful. He was mine. He was perfect.

 

Jordan Rivera Photography

Our New Reality

Josiah is now only a month old and has already had numerous doctors visits, a small procedure, a device he has to wear daily (NAM) to help bring his mouth and gums closer together, and a tentative date on the calendar for his first surgery. This is not “normal” newborn life. But it is our normal and our new reality. At times, feedings are difficult and milk comes spewing out of his nose frequently. In the future, he may face difficulties with his speech or social interactions, due to his cleft. We know the road ahead is a long one. A cleft lip and palate is not just a quick fix or quick repair. It is years of doctors appointments, surgeries, overnight hospital stays, speech therapies, post-op visits, and more. Calvin and I know that the road ahead may be a long one, but we desire for Josiah to know he is never alone in this.

 

Jordan Rivera Photography

Awareness

July is National Cleft and Craniofacial Awareness Month. Two medical terms I wasn’t familiar with before having my son. And another month worth celebrating each summer. Calvin and I have committed to helping raise awareness of cleft lip and palate, as well as encourage other families who have children with medical needs.

A cleft lip or cleft lip and palate is one of the most common birth defects and effects about 1 or 2 in every 1,000 babies each year. Prior to the ultrasound where the cleft was first detected, I knew nothing about clefts or Craniofacial care. That is why, as a lifestyle and faith blogger, I’m now determined to use my platform to raise more awareness. As a local here in Katy, I desire to connect with other moms that have a cleft cutie or any mom that has a child with a medical need

If you know of a family with a child who has a cleft lip or palate, encourage them. Love that child well and remind them they are beautiful and strong. No one should have to journey through this alone. Be the support those parents and that child needs.

Because all children are beautiful. All children are strong. All children deserve to be celebrated.

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